Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

Kati

Kati

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Never Give Up said:
Young people know things that old people don't. For instance, did you know that searching the hashtag #iacfsme reveals anyone who is tweeting about IACFSME?

https://mobile.twitter.com/hashtag/IACFS?src=hash See what you can find.

Now that I know does it make me young again?
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It's a bit frustrating because folks are not using the same hashtag. Cort is using #IACFS/ME but this is not searchable because of the slash, therefore useless. Other are using mile long hashtag like #IACFSMEpreconference (half of the characters are then gone) and now there is #IACFSMEconf -

It's confusing. Know that the hashtag is not meant for the people from our community to find our tweet, but it is meant for those now familiar with our community to find a collection of all the tweeters, and the tweets.

One journalist (Miriam Tucker) used #IACFSME, which would be the hashtag of choice but no one used it.

And we won't discuss here the disease hashtag :bang-head:
 
Daisymay

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Marc_NL said:
Sort Johnson's tweets on Ron Davis AND Fluge/Mella

https://twitter.com/i/web/status/792195789032460288
https://twitter.com/i/web/status/792196306072633345
https://twitter.com/i/web/status/792196521584369664
https://twitter.com/i/web/status/792196796873408513
https://twitter.com/i/web/status/792197131570413568
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Wow!

Thanks for posting Marc.

These tweets reminded me of this:

http://www.margaretwilliams.me/2010/documented-evidence-of-inflammation-in-me.pdf

"1955

In this outbreak of ME in Adelaide, Australia, an agent was repeatedly transmitted to monkeys; when the monkeys were killed, microscopically, infiltration of nerve roots with lymphocytes and mononuclear cells was seen and some of the nerve fibres showed patchy damage in the myelin sheaths and axon swellings consistent with neurological involvement. In these monkeys, there were widespread changes involving the dorsal root ganglia, cervical and lumbar nerve roots and peripheral nerves. Perivascular collars of lymphocytes and plasma cells were in the cerebral cortex, brainstem and cerebellum, spinal cord and around blood vessels to nerve roots (Pellew RAA, Miles JAR; Med J Aust:1955:2:13:480-482, cited by J Gordon Parish; Postgraduate Medical Journal 1978:54:711-717).

This is particularly significant, given the autopsy evidence presented at the Royal Society of Medicine meeting in the series “Medicine and me” on 11th July 2009 by Dr Abhijit Chaudhuri, where he showed slides of inflammation of the dorsal root ganglia in three ME/CFS patients."

Obviously these were findings from just one specific outbreak.
 
Forbin

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It's hard to make out, but, in the last minute or so of the Ron Davis video, there is a brief discussion that seems to be about whether "it" is in the serum, or if "it" is intrinsic to the cell / mitochondria ("it" presumably being the unknown factor causing the mitochondrial dysfunction).

Dr. Davis is initially guarded, but eventually says, "I think it's in the serum, too."

Then, he said something that would be good to keep in mind:
"So, if it's in the serum, it's something that is in the serum, and a positive effect, like an antibody - or it's something that's missing from the serum."
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[Bolding mine.]
 
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S

Sasha

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Sidereal said:
The problem is in the pyruvate dehydrogenase complex. Cort's other tweets from Fluge's talk expand on this.
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Sorry if this was discussed yesterday and I missed it - but there's actually a deficiency disease of this, apparently:

http://emedicine.medscape.com/article/948360-overview

Maybe this deserves its own thread (I'll leave it to others to decide if there's actually anything to say about it - I don't know enough).
 
Sidereal

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Sasha said:
This is likely to be what they're calling the "big news"? (Sounds big to me, if they've identified a key thing, but what do I know!)
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I doubt that's the big news in itself. We already have metabolic studies showing a problem here including the Japanese study that came out a few days ago. What Cort seems to be saying is that there might be a B cell mediated problem that's blocking the enzyme. If that's true then yes that would be an extremely significant finding.
 
Sidereal

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Sasha said:
Sorry if this was discussed yesterday and I missed it - but there's actually a deficiency disease of this, apparently:

http://emedicine.medscape.com/article/948360-overview

Maybe this deserves its own thread (I'll leave it to others to decide if there's actually anything to say about it - I don't know enough).
Click to expand...
That's got nothing to do with ME though. That's an inborn error of metabolism that's a million times more severe than what we're dealing with and often fatal.
 
Geoffrey Hallmann

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OK Jason is on this morning with a talk about Critieria.

Major point on Fukuda - Sleep, Cognitive and PEM are the key criteria, but are not compulsory. They symtpoms therefore can be any of the 8 and hence dilutes the pool of patients with others. Pointed out that the prevalence of Mood Disorders in the US is 2.2% at any one time, and the work of Wessely (2.7% and Reeves (2.6%) is remarkably similar. He suggests that the reason for that is simple - its diluted with the mood disorders hence the jump using the Oxford and Reeves Criteria.

The Canadian criteria tightening this up and refined the patients selected.

The Ramsay criteria was operationalised in the London Criteria, He felt the operalisation of the Holmes criteria was similar to the London Criteria results.

Using factor analysis - the three latent factors revealed that cognitive function, sleep and PEM were the primary domains.

Data Mining - using a variety of nodes allowed people's symptoms to be identified using 4 specific nodes and picked up similar to 8 and the CCC criteria.

The IMO recommended SEID and that this should replace CFS and ME.
- substantial reduction or impairment of pre-illness activities
- PEM
- unrefreshing sleep
- At least one of cognitive impairment or orthostatic intolerance

The strength of the IOM SEID identified core seas and few domains.
It is limited by the fact that you have either cognitive symptoms or orthostatic when the latter is not as high as cognitive impairment. Light (2012) found subgroups in CFS.

Policy on Exclusionary Illness - Now treated more as comorbid illnesses. Felt it would increase the prevalence by 2.8 times over Fukuda because of Melancholic Depression and Medical reasons now being caught in net.

The work of the P2P was not finished. It identifies the core criteria but did not do the exclusionary. Needs to do the later to keep the cohort more homogenous.

Possibly - they need to get consensus on which criteria needs to be used for research across the board. They also need to come up with a palatable name that patients will accept, and reflects the disease. Polls have confirmed that ME was the preferred term (68% of patient community in poll). ME has less negative attributions as well, it has been found. It sounds medical and real.

One possible classification system is to make the name ME, and have the clinical criteria based upon of the other criteria. There needs to be a new term for clinical criteria.

Those that don't meet the criteria fit in a general criteria - 6 months of fatigue. Presently they come into criteria - eg Oxford.

Way Forward - Develop a new criteria (by consensus) that has inclusive and exclusive criteria.

To do this, it needs to be genuinely inclusive of all parties.
 
Geoffrey Hallmann

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Lucinda Bateman - Jason was someone she looked up to and was mentored by when she came into ME/CFS.

They were astounded by the CDC Reeves study. The CFS-like people were astounding and indicating a public health issue that needed to be addressed.

The IOM report is to improve CLINICAL DIAGNOSIS of ME/CFS in primary care.

- Core criteria based on Jason's research - mostly
- Emphasis on objectively identifiable issues
- Worked to a core criteria

Core Criteria:
- Put impaired function in there to distinguish from fatigue in other diseases
- PEM
- Unrefreshing sleep
- Either Cognitive impairment or orthostatic intolerance. She felt the cognitive was being overlooked and that it was easy to measure and can be done at bedside.

Exclusionary Criteria
- Not there because it can occur in other illnesses
- allows diagnosis to be made in those with comorbid illneses

Canadian Criteria
- there is a lot of overlap with the CCC

SEID or ME/CFS?
Chose SEID so that core criteria is included in the name

Confusion
- in academic SEID is being used
- at federal ME/CFS is being used
- There is significant confusion occurring now.
 
A

ash0787

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Navid said:
Was there any actionable news for patients shared in terms of treatment and or being tested
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As I understand this device was produced in a similar way to a microprocessor, as such it is probably very expensive and not viable to mass produce, I think it was mainly intended as a proof of concept and or for drug testing to find a cure.

We can probably assume that diagnostics on regular people or existing patients would be done with metabolomics or chemical specific tests at some point
 
Geoffrey Hallmann

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John Kaiser

- Pateint
- CEO of Company doing Pharmaceutical
- Researcher

BIG PHARMA
- feels that they need to be involved
- Funding will go up by 50 to 100 times if they become involved
- the lack of name and criteria is holding them back
- they are risk averse and don't like uncertainty
- In AIDS, $30Billion came in once it was identified and named

WAY FORWARD
- must set name and diagnostic criteria
- Pharma accept it is there

CRITERIA
- Agrees with Lenny
- Fukuda is not specific enough. Lets too many with ME/CFS into the cohort;
- The CCC has not been taken up in the US by primary care doctors. This is an issue. Feels it is overly complex. Good for an ME/CFS specialist, but not a family practice doctor. Needs something simple to enable diagnosis in one or two visits.
- More comfortable with the IOM process doing a thorough and deep analysis
- SEID is not confusing and can be applied by primary care doctors.
- comfortable that it is scientifically derived
- believes it identifies ME/CFS patients
- comfortable in using it BUT the name is not good.
- Name is not key issue - just identify the criteria well
- A word map of the conference would see that ME/CFS has been the most used term here at this conference.
- he is comfortable with ME/CFS
- more important to develop a consensus about it.
- Comorbid illnesses allow for more than one disease and he likes that - he cited a case of a stabilised AIDS patient who developed ME/CFS.
- In clinical practice - allowing for the codiagnosis of comorbid illness is an important step forward

CLINICAL v RESARCH
- believes that comorbid illnesses would muddy the research studies
- should be allowed for clinical practice, but use pure ME/CFS without comorbid to avoid confounding in research
- Would give clean research data
 
Geoffrey Hallmann

Geoffrey Hallmann

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Questions

Jason - CCC was designed to be clinical and became research That's the problem with SEID is that it was being designed for clinical but will inevitably be research criteria.
- Needs an ongoing consultation about the criteria because like AIDS it will change over time. Doing a 4 year review and consultation is not sufficient - it must be ongoing
- Doing a study now and doesn't know what criteria to use when they report to th public. This creates difficulties and makes preparing results hard.

Bateman - there is sufficient evidence of inflammation to use the "it is" in Myalgic Encephalomyelitis - that is well proved now.

Kaiser - The absence of an ICD 10 code is unprecedented - to have 1 million people with it, and not have Big Pharma working on it is amazing. One reason for the lack of an ICD10 code is the lack of agreement on the name and criteria. Physicians used Chronic Fatigue -unexplained code. T

Bateman - The changes from the IOM were too late for the ICD 10. It is difficult to get funding without a code.

Jason -
1. There are algorythm's that exist to see which case definition is met
Steps to Research Criteria - likes the approach of Beth Unger - collect data.

2. Anything done in US permeates throughout the world - don't take an isolationalist approach

3. Don't exclude the pateints. Also go to the research community and scientists.
Get a group together and gain consensus
 
Geoffrey Hallmann

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Mark Van Ness - Heart Rate Variability

PEM
- looking at what occurs in the post-exertional state
- Physical stress can give an insight into what occurs in the illness
- activates immune system

APPROACH
- patients are encourage to come in refreshed and at their best
- use a 2 day approach to get the illness at their worst
- compare day 1 to day 2

STUDY
- Day 1 - 39 ME/CFS and 39 Controls
- Day 2 - 19 ME/CFS and 19 Controls
- Referred by knowledgeable physicians

METHOD
- Incremental exercise to max
- Anaeribic threshold determined by V-Slope method
- Maximal Effort

HEART RATES
- Pre-exercise heart rate
- at anaerobic threshold
- at highest work load

FINDING
- No differences in heart rates between controls and ME/CFS
- No differences in test 1 or test 2
- No post-exertional change in heart rate
- When comparing ME/CFS groups between day 1 and day 2 there were differences
- On test 2 there were differences between ME/CFS and control group
- On this latter comparison the heart rate drops just before anaerobic threshold and is more significant at maximal

Chonotropic Incompetence
- similar type of thing is present in ME/CFS
- inability meet output
- reveleaed in post-exertional pathology
- believe it to be an under-representation of the population because the participants were better functioning
 
Geoffrey Hallmann

Geoffrey Hallmann

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Kati said:
It's a bit frustrating because folks are not using the same hashtag. Cort is using #IACFS/ME but this is not searchable because of the slash, therefore useless. Other are using mile long hashtag like #IACFSMEpreconference (half of the characters are then gone) and now there is #IACFSMEconf -

It's confusing. Know that the hashtag is not meant for the people from our community to find our tweet, but it is meant for those now familiar with our community to find a collection of all the tweeters, and the tweets.

One journalist (Miriam Tucker) used #IACFSME, which would be the hashtag of choice but no one used it.

And we won't discuss here the disease hashtag :bang-head:
Click to expand...
My Fault there - when I began the conference there wasn't a hashtag available - hence I try and put it into each posting here
 
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